NHS Digital and the future of data sharing
Over the past months I have been pressing the Government to ensure that any sharing of patient data is built on trust and transparency.
Earlier this year, following direction from the Government, NHS Digital released plans for a new general data-collection and data-sharing service called General Practice Data for Planning and Research (GPDPR). This service would collect patient data and make it more readily accessible to those who can learn from it, including researchers and academics.
I fully support data sharing in principle. I believe it is an important pillar in producing vital knowledge which will improve healthcare and ultimately save lives.
However, personal data is extremely important. It is vital that data sharing is transparent and patients who have their data shared understand and consent to the process, know who may be able to see their data, and trust the system. I appreciated concerns, including from some in our constituency, that the Government failed to properly consult with patients on this issue and address concerns.
Instead, the Government tried to sneak the scheme out and simply hoped that nobody noticed.
As Shadow Primary Care Minister, I have been leading the Parliamentary opposition to the Government’s plan.
I met with other MPs and engaged with some of the campaigners and activists who opposed the Government’s plans. In June I wrote directly to NHS Digital and the Health Secretary to highlight concerns and urge NHS Digital and the Government to be open and transparent and respond to patient concerns. I also challenged the Health Minister on the Government’s failure to consult in the House of Commons. This campaign caused the Government to announce a two-month delay to the GPDPR rollout date.
However, whilst a delay was welcome, it was not enough and would simply have meant the scheme would have begun whilst Parliament was in recess and unable to further examine it. In July, I urged the Health Minister at Parliamentary Question Time to go beyond a short pause and give the process the time it needs to ensure proper consent and understanding.
I was pleased to receive a commitment from the Minister to spend as long as was necessary before GPDPR’s implementation, which was followed by the Government announcing a week later, as a result of this sustained pressure, that it would indefinitely delay GPDPR’s rollout date and commit to boosting public understanding and providing more choice to opt in and out of the scheme.
Whilst I will continue to monitor this issue closely to ensure the Government don’t return to attempts to sneak it out, we have successfully forced the acknowledgement of real and valid concerns and patients are now being treated with the respect they deserve.